Medical Ethics and Communication

17 Medical Ethics and Communication Cyrus Rustam Kumana and Rosie Tse-Ise Young Overview The multitudinous aspects of medical practice are intimately related to ethics (a code of morally acceptable behaviour expected of medical professionals). Though such rules of conduct are informal and depend on an individual’s own personal values, commonly they are explicitly sanctioned by the respective com- munity/society to which they apply. Moreover, such informal codes are inextricably linked to the law of the land, though they are by no means identical. In essence, medical ethics embodies the profession’s responsibilities towards: (i) patients and their relatives, (ii) other medical professionals, and (iii) the community. Due to cultural factors, they vary from place to place and evolve with time. However, at any one time and in any given jurisdiction, an officially recognized body or “medical council” usually agrees upon such an accepted code of conduct. Typically, such bodies also undertake to disseminate the agreed code to relevant profes- sionals, update it as required, monitor its implementation, and investigate and deal with complaints and possible transgressions. The key principles of modern medical ethics incorporate ideas Originating in the Hippocratic Oath, although sometimes they appear to be in conflict with each other. These principles can be Summarized according to the acronym ABCDE:

248 Problem-Based Medical Case Management AUTONOMY: recognition that mentally competent patients have the right to exercise individual choice without pressure from others. BENEFICENCE: actively intervening only to do good. CONFIDENTIALITY: not divulging an individual’s clinical or social details to third parties not involved in the patient’s care. DOING NO HARM: sometimes termed non-malfeasance. EQUITY: justice for individual patients and the greater good of society as a whole. In this context, equity embodies: 1. Fair distribution of resources according to agreed criteria based on clinical priorities. . Non-exploitation (sexual or monetary) of vulnerable patients. . Practitioners being aware of their own limitations and willing to refer patients, if and when necessary. . “Whistle-blowing” that should be carried out discretely, after due consideration, and according to agreed guidelines. This is to protect patients from colleagues who may be medically incompetent or unfit to practice due to temporary or permanent physical illness or mental disturbance (including alcoholism or drug abuse). ‘ Good communication (in all directions) between medical staff, - patients, and relatives is at the very heart of good practice. Doctors are therefore obliged to develop and nurture suitable skills to facil- | itate pertinent interpersonal exchanges effectively. In the course of such interactions medical professionals are expected to: ‘ Introduce themselves, show empathy, and allow the other party sufficient opportunity to speak. - Communicate messages/ideas and answer queries: (i) satisfac- _ torily, (ii) with clarity, and (iii) without jargon. Demonstrate responsibility and an awareness of ethical issues. Verify that all parties understand each other and determine - whether any further questions/issues need to be answered and/ or resolved. :

Case 17.1 Medical Ethics and Communication 249 + Provide a plan of action, at least in outline, including if neces- sary a follow-up appointment and/or a second opinion from a suitable professional colleague. 17.1 A patient with haemorrhagic stroke Clinical scenario You are a hospital medical officer on duty. Earlier in the day Mis. P. C. Man, a 72-year-old widow has been admitted to your ward as an acute emergency after experiencing a haemorrhagic stroke (confirmed by CT). She had become comatose (responding to pain only). The neurosurgeon who saw her felt that no interven- tion was warranted other than supportive measures. She had suf- fered previous strokes and before this admission she was entirely dependent on others for the activities of daily living. Nevertheless, her daughter insists that everything possible should be done to keep her mother alive, arguing that the sanctity of life is absolute and that Mrs. Man is her only living relative. You are now asked to meet with Mrs. Man’s daughter and discuss institution of do-not-attempt-resuscitation (DNAR) instructions. Appropriate explanation and issues to discuss 1. The guiding management principles of beneficence (interven- ing only to do good) and non-malfeasance (doing no harm) should be outlined. 2. The prognosis of the patient should be communicated realisti- cally, explaining the futility of cardiopulmonary resuscitation (CPR); restoring cardiorespiratory function will not restore prospects of any meaningful quality of life. 3. Explain that CPR could inflict pain, discomfort, and other com- plications, quite apart from dehumanizing the environment for the patient and next of kin at a critical time. 4. Explain that DNAR orders are not equivalent to withdrawing all treatment/support for the patient; if infection or fits supervene,

250 Problem-Based Medical Case Management Case 17.2 these would be treated. Whereas, if resuscitation succeeded, the patient would probably be restored to an even worse state. 5. The relatives can be assured that the patient’s condition would be monitored and if warranted by a change, DNAR orders can always be rescinded. 6. No relative is asked to endorse the DNAR instructions; rather he/she is expected to confer with the medical team to facilitate the decision, and receive an explanation of the rationale. 7. Whether the patient ever expressed (verbally or as a written advanced directive) that medical care givers were to desist from heroic measures should be determined. (See Appendix on Guidelines on Do Not Attempt CPR Decisions) 17.2 A lorry driver with epilepsy Clinical scenario You are the medical officer caring for a 38-year-old lorry driver who is about to be discharged from hospital after having 2 grand mal seizures and being newly diagnosed as having idiopathic - epilepsy. The patient was therefore started on regular oral anti- - epileptic medication. The patient insists on returning to his joband is very anxious that the nature of his illness not be disclosed to any other party. What advice would you offer with regard to his continuing to drive? ‘ Discussion « As the treatment has just been started, its effectiveness is still to be confirmed and disabling side/adverse effects may yet : develop. . + If the patient remains seizure-free for a finite period of time, - he could then drive again (so long as anti-epileptic medication . is continued). If he remained asymptomatic for several years thereafter, the medication could even be tailed off.” V * _The legal definition of these periods varies from place to place and from time to time..

Case 17.3 Medical Ethics and Communication 251 Note three issues: — starting to drive (when epilepsy is deemed controlled); — starting to drive as an occupation; - stopping regular anti-epileptic medication + If he immediately returns to driving, he could endanger other road users, his passengers, and himself; those whose occupa- tion entails driving are at greater risk. * The legal obligation of doctors to inform his employers or others is unclear; advice on how the law applies in any given jurisdiction may have to be obtained. * In the presence of a witness, the patient should be explic- itly warned not to go back to driving a motor vehicle and be reminded of his duty to inform his employers, the driving licensing authority, and his motor vehicle insurance company about his situation. His employment contract could entail an insurance to cover such an eventuality. * That the above-mentioned advice was given should be entered and dated in the patient’s medical record and signed by the doctor (and preferably a suitable witness). The patient should also be advised of such a note in the medical record. In some jurisdictions, such advice could invalidate the patient’s driving insurance. * He needs to consider alternative employment/lifestyle and sources of finance, e.g., white-collar work; insurance and social security benefits; staying at home whilst wife works. In so doing, he also needs to avoid special situations putting him at high risk (e.g., swimming, working with machinery). 17.3 Terminal cancer of the pancreas Clinical scenario You are a medical officer about to see Mrs. ‘Wu, whose 68-year-old husband has just undergone an exploratory laparotomy for intrac- table abdominal pains and was diagnosed to have inoperable car- Cinoma of the pancreas. After the operation, Mr. Wu is transferred back to the medical ward to recover from the stress of surgery. His

252 Problem-Based Medical Case Management Case 17.3 doctors recognize that he is terminally ill and not expected to live beyond 3 months. Mrs. Wu and her son (a medical doctor) do not want you to reveal the diagnosis to the patient or that he is dying. Mrs. Wu contends that: 1. 2. Informing the patient will do immense harm, as at this stage her husband needs all his strength to get over the operation. Revealing the findings will upset him, make him give up, and his condition will go downhill rapidly. She knows her husband better than anyone and is therefore a better judge of his best interest. The family have the right to decide what to disclose. Discussion You will take into account her husband’s cultural background before disclosing the facts. However, he comes from a medical family (his son is a doctor), and surely the patient is bound to want to know what transpired at the operation. ‘ Why would he not wish to know the findings and be unable to cope with them? ‘ If the patient asks you, lying would not be ethical. However, if by his silence during consultations he indicates he does not : want to be informed, then the findings need not be disclosed. The doctor’s first duty is to respect the patient’s autonomy. So if the patient wishes to know the operation findings, you are duty bound to respect such wishes, rather than those of the family. Has the patient explicitly stated he does not want to be told - any bad news? Alternatively, has anyone been designated by him as a representative to whom such information should be disclosed? Whilst realizing the news could be upsetting, the patient will be offered counselling, medical treatment to allay anxiety and/or depression, other supportive care, and an opportunity to seitle his affairs. 1

Case 17.4 Medical Ethics and Communication 253 17.4 Consent for drug trial Clinical scenario You are the medical officer on duty at night and have been asked Lo help obtain informed consent from a patient being recruited into a clinical trial of a new, orally administered anti-platelet drug that was to be taken once daily for 1 year. The patient had been admit- ted earlier that evening after sustaining an episode of right arm weakness lasting only 15 minutes. After a CT of his brain he was diagnosed as having a transient ischaemic attack (TIA) or stroke in evolution. Having read over the informed consent form and before signing it, the patient wants you to clarify the following points. 1. This form mentions allocation to receive either active drug or placebo (an inert look-alike substitute) and that treatment assignment “will be randomized”. What does this mean? 2. Could allocation to the two treatments be carried out alterna- tively, as successive patients join the trial instead of randomly? 3. Why should he join the trial if he might end up receiving “inactive treatment”? 4. Why have the tablets of the active drug and the dummy medica- tion being compared got to look identical? 5. Could you clarify what the term “double blind” means? 6. Will it be unsafe, if nobody knows which medication he is receiving? 7. The form states: all details pertaining to the patient “will be kept confidential” and that the patient can withdraw from the study at any time “without prejudice to future treatment”. What do these terms mean? Discussion L. Allocation to the two alternative treatments should be deter- mined by the play of chance—e.g., toss of a coin or computer- generated random numbers, because any systematic scheme for allocation is liable to bias. For instance, if all patients seen in

254 Problem-Based Medical Case Management Case 17.4 hospital A (the cardiac centre) receive drug X and those attend- ing hospital B (the GI centre) receive drug Y, any outcome dif- ferences between the two treatment groups could be related to referral patterns or differences in other treatment strategies at the two hospitals rather than receipt of treatments X or Y. 2. Randomized allocation is preferred as assignment of successive patients to the two treatments alternatively could give rise to several types of biases as follows: — If drugs are being administered alternatively by injection (Al B1, A2 B2, A3 B3, etc.), as the trial progressed it is possible that successive doses gradually tend to get larger (or smaller). In that case, in all pairs, those receiving drug B would on average get larger (or smaller) doses than those given drug A. In which case any difference in outcomes could be due to differences in dosage rather the drugs. — Ifinvestigators are aware that treatment allocation alternates, and guess (rightly or wrongly) that a certain individual has received active drug (or placebo), assessment of all subse- quent patients will become biased. 3. Hitherto the new medication may be of no proven clinical benefit in the context of the disease under consideration and there may even be a remote possibility it could be harmful. Presumably, the trial drugs (active agent being tested or the inactive alternative) are to be given in addition to usual medica- tion of proven value (e.g., aspirin). Moreover, all patients would be very carefully monitored for possible adverse effects. . 4. Treatments must look identical as their appearance can also affect responses, e.g., blue pills are “calming” and red pills . “energizing”. 5. The patients and the investigators are “blinded”, which means being made unaware of treatment allocation. . 6. All patients are followed closely; adverse effect risk of active drug is likely to be known already and regarded as acceptably small. Hopefully benefits could outweigh risks. If needed, investigators could always break the code to determine what | treatment the patient has been getting. ‘

Case 17.5 Medical Ethics and Communication 255 7. Details about the patients, their diseases, treatments, and even- tual outcomes will not be identifiable. Even in any photograph of the face, eyes will be blanked out. Withdrawing from the study in the future will not compromise treatment. 17.5 Emerging controversies Obtaining consent for medical treatments/interventions In many parts of the world including Hong Kong, for more than a century the process of obtaining patient consent for medical procedures and treatments relied on the so-called Bolam princi- ple. According to the Bolam test, any plaintiff seeking to prove medical negligence needs to show that there was a breach in the duty of care between the medical professional and the patient. For this purpose, duty of care was defined very broadly and included any type of care that a responsible body of medical professionals would consider not negligent. This duty of care was upheld, even if it was a minority view that was generally regarded as suboptimal and not consistent with more widely accepted standards of care. In 2015, this approach to obtaining consent for treatment (as well as the patient’s subsequent management) was successfully challenged after an appeal to the UK Supreme Court. The case in question focused on a diabetic mother of small stature that was vaginally delivered of a baby that suffered severe permanent dis- abilities, which the appellant attributed to the negligence of her Obstetrician. In particular, it was argued that during the antenatal period, the patient was not properly advised of the risks of a larger than normal baby (due to her diabetes) having shoulder dystocia, and vaginal delivery in a woman of small stature. Moreover, the relatively greater safety of the alternative option of Caesarian delivery pertaining to this particular plaintiff was not discussed. The advice the appellant received was despite specific requests 10 be appraised of possible delivery problems due to the baby’s size. The defendants maintained that they had advised the patient according to their standard practice, as disclosure of the possible

256 Problem-Based Medical Case Management Case 17.5 very rare serious (but usually treatable) risks might have persuaded the plaintiff to opt for Caesarian delivery (a recourse they con- sidered to be unwarranted). However, the law lords accepted the argument that as the patient had expressed concern about the size of her foetus and the risk that the baby might be too big for vaginal delivery, she deserved an honest objective response, no matter how disclosure of such information might influence her decisions. This ruling implies that no matter that a particular therapeu- tic intervention is considered acceptable by a responsible body of physicians, it may nevertheless be regarded as negligent if it does not involve properly informing the patient about risks and available alternatives before seeking consent. This stricture is par- ticularly poignant whenever the patient asks about such matters. - In other words, the patient has a right to be properly informed, and that his or her right to participate in any related decisions must be respected. It remains uncertain however, to what extent the Bolam test will be regarded as no longer applicable to the process of obtaining patient consent for treatment. There is also uncertainty as to whether this particular UK ruling will be followed elsewhere. Breaching doctor patient confidentiality? In 2015, Mr. Lubitz, the co-pilot of a Germanwings plane en route from Barcelona to Dusseldorf, appeared to have deliberately crashed the plane he was flying into the French Alps, killing all 150 persons on board. Mr. Lubitz was known to have had a past . history of depression (including suicidal ideas), and crucially a search of his home after the crash revealed a note from his doctor excusing him from flying on that date. Although the exact details of the relevant doctor patient consultation are not known, avail- able information nevertheless raises an interesting medico-legal dilemma. Namely, if the doctor in question had some inkling that his patient might deliberately crash a plane with all its passengers and crew—should he or she have acted more decisively to prevent the co-pilot from flying? - Many other situations may be analogous to the above mentioned scenario. For example, an HIV-positive individual may engage in

Case 17.5 Medical Ethics and Communication 257 unprotected (or protected) sex with a partner without disclosing his or her disease status. Similarly, a patient with a potentially serious and highly infective condition (e.g., SARS or MERS) may make no effort to avoid infecting others. While the laws governing relevant disclosures can differ from country to country, interestingly in many jurisdictions, it is gener- ally conceded that there is a duty to warn so as to protect potential victims by notifying the police and/or others. Such laws may there- fore shield the doctor from liability under similar circumstances. Evidently, fear of penalties resulting from such disclosures may well intimidate professionals from taking the risk of notifying authorities. In reference to the release of confidential material by doctors, generally it should be to prevent or lessen a serious and imminent threat to the health or safety of a reasonably foreseeable victim or victims. Moreover, such disclosures should be made to a person or persons able to prevent or lessen the threat, including the harm that could accrue to the putative victim(s). In individual situ- ations therefore, the doctor may need legal advice regarding the laws applicable in his/her jurisdiction, but if time does not permit such inquiry—disclosure may have to depend on the relevant pro- fessional’s conscience. End of life issues and assisted dying Suffering (which includes pain, depression, and despair), par- ticularly near the end of life, has always been part of the human condition. In the latter context, it is every physician’s duty and obligation to relieve suffering and promote the dignity of dying patients. At the same time the physician must recognize and respect the autonomy and decisions of competent patients, whilst also remaining true to their own moral values and beliefs. Every physician should also be aware of the laws applicable to end of life care in the jurisdictions in which he or she practises. Physician-assisted suicide is the term used whenever a doctor facilitates a patient’s death by providing the necessary means and/ —_— “ HIV = Human immunodeficiency virus; SARS = Severe Acute Respiratory Syndrome; MERS = Middle East Respiratory Syndrome

258 Problem-Based Medical Case Management Case 17.5 or information to enable that person to end life, knowing that suicide may well ensue. In euthanasia by contrast, it is the physi- cian who undertakes the final step, be it active (e.g., injecting a lethal drug) or passive (withholding treatment or supportive care). As of now, active euthanasia is legal in very few countries (Holland, Belgium, Luxemberg) and only if the patient is con- sidered mentally competent, if the request is voluntary, and if prospects of relieving the suffering are deemed to be nil. Passive euthanasia and assisted suicide are legal in parts of the U.S. and Europe. According to English law, all mentally competent adults have the right to refuse medical treatment, which is virtually a form of collaborative passive euthanasia. Individuals also have the right to predetermine the extent of future interventions they are to receive, through proxies or legally binding advance decisions/ directives. The main argument against assisted dying and euthanasia is that they smack of abandonment. Unlike the past, nowadays palliative hospice care has become very effective. With the aid of modern medicines, knowledge, and skills, it is usually feasible to relieve suffering effectively, so as to vastly reduce or eliminate the desire to hasten death. In the process however, the duration of survival may nevertheless be shortened. No matter what decisions are taken, their emotional impact on relatives as well as on relevant medical professionals should also be appreciated. t Further reading 1. JUDGMENT: Montgomery (Appellant) v Lanarkshire Health Board (Respondent) (Scotland) 11/3/2015 2. Downer J, et al. (2014). Physician-assisted death: time to move beyond Yes or No. CMAJ 186:567-68. j Kellerhear A. (2015). Is healthy dying a paradox? OMEGA 70:43-55. 4. Rieder P, et al. (2016). The end of medical confidentiality? Patients, physicians and the state in history. Med Humanit 42:149-54. had